“The World Health Organization’s definition of Definition of Lyme disease Dementia has improved.

Dementia is a rapidly expanding and fatal neuro degenerative illness that may affect all persons. Usually it effects the elderly

Implications and challenges regarding the new definition follow.

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Lyme is a bacterial infection

Both Lyme Borreliosis and relapsing fever borreliosis have stages of dissemination and multiple varieties of symptoms afflicting multiple bodily systems in relapsing remitting fashion —similar to syphilis, another spirochetal infection. Lyme is transmitted by the bite of infected ticks, by congenital transmission (from mother to children) and may be transmitted by other means.

If left untreated the infection can spread to joints, the heart, and the nervous system and all organs; this may cause life-threatening complications, including dementia. Early signs of infection include fever, headache, fatigue, and a characteristic skin rash called erythema migrans.

What is the international classification of diseases or ICD?

The ICD is ‘a common global language’ for health professionals. ICD10 was based on approximately 14,400 codes whereas ICD11 represents more than 55,000 codes for disease diagnoses and identifying injuries and causes of death. The ICD are also used to identify health trends, progress and threats and statistics worldwide.

ICD is used by national health systems and program managers, data specialists, policy makers and others who allocate health resources and track national and global health.

From ICD10 to ICD11

Jenna Luché-Thayer, the founder and director of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, reported,

WHO has recognized Lyme borreliosis to be a ‘disease of consequence’ since the 1990s, but the Lyme codes have remained basically unchanged and many definitions of complications from Lyme disease have also been omitted. [Footnote 1], [Footnote 2]

Luché-Thayer reports the Ad Hoc Committee appears to have executed a comprehensive approach that successfully establish new codes for life-threatening complications from Lyme, and improved the definitions of life-threatening complications, including dementia.

This is a major achievement for the global Lyme community because it is the first time in over 25 years that these serious complications have been officially recognized by the WHO.

This is the second change of the ICD11 Lyme dementia definition. The first Lyme dementia definition implied the requirement a Lyme diagnosis required an autopsy. [Footnote 1] [Footnote 2] [Footnote 3]

The first definition implied the need for an autopsy for diagnosis whereas the second definition recognizes clinical diagnosis and encourages the use of sophisticated imaging and laboratory technologies.

“Dementia due to Lyme disease, a disease caused by an infection with the bacteria Borrelia burgdorferi, with supportive clinical, without another identifiable cause of cognitive dysfunction.”

Implementation of this new definition will however, face significant financial, political and cultural challenges.

It appears elder abuse of those living with Lyme and Lyme dementia is also an important public health problem.

CHALLENGES

1. cultural challenges

Cultural challenges include practices related to the status and respect for the elderly. These include practices of discrimination against the elderly — including the poor, uneducated, rural groups of elderly and particularly elder women.

Factors that may increase the risk of elder abuse include:

ageist stereotypes

erosion of the bonds between generations of a family

the distribution of power and material goods within families

abandonment of the elderly

lack of funds to pay for care.

2. elder abuse

Experts report:

Rates of elder abuse are high in the healthcare sector, including medical institutions

Elder abuse is predicted to increase as many countries are experiencing rapidly ageing populations

Elder abuse includes the denial of medical care

3. no medical consensus regarding the treatment of Lyme

There are two international treatment guidelines for Lyme borreliosis, one is the 2006 guidelines written by the Infectious Diseases Society of America (IDSA) and the second is the 2016 Guidelines written by International Lyme and Associated Disease Society (ILADS).

In the case of Lyme disease, the differential diagnosis of dementia remains largely unpracticed.

4. big business of dementia

spiraling medical costs from the ‘big business of dementia’ are showing show no signs of decreasing. It is reported that decades of research have resulted in treatment failure, enrichment for few and patient bankruptcy and death

According to data from World Population Prospects: the 2017 Revision, the number of older persons — those aged 60 years or over — is expected to more than double by 2050 and to more than triple by 2100, rising from 962 million globally in 2017 to 2.1 billion in 2050 and 3.1 billion in 2100.

This data states

Globally, population aged 60 or over is growing faster than all younger age groups

In 2017, there are an estimated 962 million people aged 60 or over in the world, comprising 13 per cent of the global population

The number of older persons in the world is projected to be 1.4 billion in 2030 and 2.1 billion in 2050, and could rise to 3.1 billion in 2100

Globally, the number of persons aged 80 or over is projected to triple by 2050, from 137 million in 2017 to 425 million in 2050

In the coming decades many countries are likely to face fiscal and political pressures in relation to public systems of health care, pensions and social protections for a growing older population.”

In summary, it now appears possible that the ICD11’s improved definition for Lyme dementia will offer a solution that improves access to affordable medical care. This may result in the improvement of the longevity, quality of life, productivity and health status of billions of persons across the globe.

Faithfully,

Jenna Luché-Thayer

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Jenna Luché-Thayer. 30+ years working globally on the rights of the marginalized. Former Senior Advisor to the United Nations and the US Government. Director, Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes. Founder, Global Network on Institutional Discrimination, Inc. —Holding institutions accountable for political and scientific solutions. Email jennaluche@gmail.com

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FOOTNOTE 1: Since June 2018 release, the content of the ICD was supposed to be stable.

FOOTNOTE 3: The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes is an international, all voluntary, professional committee formed to improve the ICD codes for Lyme and Relapsing Fever borreliosis and address the human rights violations generated by inadequate codes.”

“A new study in mice sheds more light on the question of Lyme disease symptoms that persist after a “standard” course of antibiotic treatment.

These findings from Johns Hopkins University (JHU) may lead to more effective treatment for human patients with persistent Lyme disease symptoms

The study, published March 28 in Discovery Medicine, is the first to look at triple-drug combination antimicrobials in a mouse model. This is a crucial requirement before human clinical trials can begin.

First, some context

In 2017, there were an estimated 427,430 cases of Lyme disease in the United States. Studies have shown that when diagnosed and treated during the early phase of Lyme, 10-20% of patients will fail to improve after a two-to-four week course of standard antibiotics.

These persistent symptoms, which may include brain fog, pain, headache, and fatigue, have been labeled “Post-Treatment Lyme Disease Syndrome” (PTLDS) by the CDC. (Here’s why LymeDisease.org opposes the use of PTLDS as a diagnostic term.)

Patients who are diagnosed after the infection has disseminated (after four weeks or more), have an even greater chance of having persistent or recurring symptoms following standard treatment.

(I’ve previously written about Here’s , and small fiber neuropathy found in patients with continuing symptoms after short-term treatment for Lyme disease.)

This new study has two major findings that I will break down in detail. But first, let’s address how Lyme persists, and the hotly debated reasons why so many patients are left with chronic symptoms following treatment for Lyme disease.

How Lyme disease persists

Borrelia burgdorferi (Bb) is the pathogen that causes Lyme disease. In its basic, or growing form, Bb lives as a cork-screw shaped spirochete.

However, when Bb encounters stress—from such factors as the environment, contents of the tick gut, the human (or mammal) immune system, or antibiotics—it will change form. Depending on the type of stress, Bb may turn into round body forms (cysts) or biofilm-like microcolonies. This is known as “pleomorphism.”

Most antibiotics are designed to target bacteria in the growing phase. However, when threatened by antibiotics, Borrelia can simply change to a slow-growing or dormant form.

This also makes it difficult to diagnose Lyme disease via standard blood cultures. Furthermore, the lack of adequate blood tests makes it harder to determine whether the infection has cleared or not.

Many animal studies have shown that Lyme can persist or resurge up to a year after standard antibiotic treatment. It has also been demonstrated in the laboratory that standard antibiotics (doxycycline, Amoxicillin) are effective against the spirochetal (growing) form of Borrelia, but ineffective against the biofilm/persister (pleomorphic) forms.

The authors of the new JHU study have shown that these pleomorphic forms are also “persister cells.” They can cause inflammation and contribute to continuing symptoms in Lyme patients. [I wrote more about “Why persister cells matter with Lyme disease” here.]

Persistent Lyme Disease

There are many reasons why symptoms might persist following standard treatment for Lyme, including:

Individual genetics,

Co-infections (other bacteria, fungi, parasites, viruses)

Damage caused by the pathogen (especially with late or delayed diagnosis),

Improper or inadequate treatment, and

Autoimmune reaction caused by a failure of the immune system to clear the infection and/or the dead remnants of the infection.

Persistent infection.

The new study by the JHU research team supports the idea of persistent infection and adds two more possible explanations for persistent Lyme disease (PLD).

Biofilm/persister forms of Borrelia may cause more severe forms of the disease at the onset of illness

Type I. Early development of PLD, due to biofilm/persister forms of the bacteria transmitted from the tick at the beginning of infection. (In mice, the onset of severe disease was seen as early as 9 to 21 days after infection.)

Type II. Late development of PLD, due to initial infection not being diagnosed or treated early. Thus, the infection develops into late persistent disease, with the presence of treatment-resistant biofilm/persister bacteria.

The Study

The pleomorphic nature of Borrelia has not gained the attention it deserves in terms of severity of disease and susceptibility to antibiotics. To my knowledge, this is the first mammalian study that separately tests different antibiotics against different forms of Bb. These forms include active spirochetes, (noted as “log phase” in the chart below) and the biofilm/persister form (noted as “MC”).

In this study, researchers grew natural strains of Bb (297 and N40) in the laboratory. Then they separated the bacteria according to pleomorphic form. (See Log phase Bb and MC Bb in table below.) Finally, they injected each of the Bb forms into two separate groups of laboratory mice.

The mice were further separated into sub-groups of five. Researchers then treated each sub-group with a different antibiotic or combination of antibiotics for 30 days as follows: Saline, doxycycline (Dox), ceftriaxone (CefT), Dox+Ceft, vancomycin (Van), Van+CefT or Doxy+CefT+Daptomycin (Dap). The mice were then monitored for an additional 60 days for any relapse and persistent infection.

The Findings

The conclusions of the study are really quite astonishing!

First, the researchers found that without treatment (saline group), the different pleomorphic forms of Bb caused varying degrees of severity of the disease.

Specifically, all the mice infected with the persister forms “MC Bb infection” developed more severe Lyme arthritis and Lyme carditis than those infected with the “Log phase.”

The second major finding is that not all forms of Bb were killed by the single antibiotics that are currently recommended by the CDC (doxycycline, ceftriaxone). Specifically, the researchers found that only the triple-drug combination of doxycycline+ceftriaxone+daptomycin (Dox+CefT+Dap) eradicated the infection from all the mice—even those infected with the persister forms of Bb (see table below).

The authors state, “The inclusion of persister drug daptomycin in combination with doxycycline and ceftriaxone is critical to eradicating the persistent infection.”

Dr. Ying Zhang, the lead author of the study, is encouraged by the results of the triple-drug combination. He states, “Our study provides a possible explanation of PTLDS due to persister inocula and shows persister drug combination approach is more effective at curing persistent Lyme disease. Future clinical trials are needed to evaluate if persister drug combinations could more effectively cure patients with PTLDS.”

This means that patients who are infected with persister forms of Bb at the onset, and those with late stage (or delayed diagnosis) Lyme may be predisposed to more severe infection and should be treated accordingly

The researchers propose that treating with the proper triple-combination of drugs may provide a cure for persistent symptoms of Lyme disease and are planning the design of a clinical trials to test this theory.

And that is probably the best news patients who continue to suffer with symptoms of Lyme disease have heard in a very, very long time!

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. Follow her on Twitter: @LonnieRhea Email her at: lmarcum@lymedisease.org .”

The World Health Organization has updated their ICD codes and interestingly enough..Congenital Lyme Borreliosis has been included!

Congenital Lyme is an alternate mode of transmission of Lyme – from infected mother to her baby in-utero – thus the narrative changes from a purely zoonotic disease (from tick to human), to one that can be transferred human to human, mother to child.

This is HUGE! Recognition of this REALITY that has been known about and documented for over 30 years..we will see what happens next and of course we will be sharing this exciting international recognition of Congenital Lyme Borreliosis with the Public Health Agency of Canada.

What are ICD codes? ‘The International Classification of Disease, Eleventh Revision (ICD-11) is a system of medical coding created by the World Health Organization (WHO) for documenting diagnoses, diseases, signs and symptoms and social circumstances.’

The 2018 Report ‘The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients’ was submitted to Special Rapporteur

Corruption and Human Rights Violations Against Lyme Doctors, Scientists and Parents Now on United Nations Record

The 2018 Report ‘The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients’ was submitted to Special Rapporteur Michel Forst and to Special Rapporteur Dr. Dainius Puras of the United Nations in March 2018. This resulted in a meeting between United Nations Human Rights Council Special Rapporteur Forst and medical professionals, scientists, human rights experts and advocates on June 5, 2018 in Geneva, Switzerland.

FOR IMMEDIATE RELEASE – June 12, 2018. The United Nations (UN) Special Rapporteur for Human Rights Defenders, Michel Forst, heard presentations on multiple countries from the all voluntary Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes, whose global members are dedicated to addressing the borreliosis pandemic.

Jenna Luché-Thayer, Director of the Ad Hoc Committee, gave an overview from the 2018 Report ‘The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients’ that was followed by representatives sharing cases from their countries. She started by contrasting scenarios where the public recognition of human rights issues differs. For example, most people recognize the devotion to human rights of the journalist who goes into a war zone to find and share the truth of innocent people brutalized by war crimes and the risks taken by the persons who organize to free children from international sex trafficking. These defenders of human rights can be easily identified because they are working to address situations we all can recognize as horrific.

In contrast, the healthcare systems across the globe are largely recognized as flawed but not intentionally horrendous. However, increasing numbers of scholarly publications have documented how these healthcare systems have become quietly corrupted and this has led to a global healthcare situation wherein “criminal activities have become normalized”, according to Dr. Dainius Pūras, the UN Special Rapporteur on the right to health.

The defenders of Lyme and relapsing fever borreliosis patients include medical professionals, doctors, scientists, patients and advocates fighting for the health human rights of this patient group. The Report shows how many of these defenders are routinely defamed, their freedoms to associate and speak restricted, and their livelihoods are threatened. It also shows how parental rights of parents of severely ill children are routinely violated by State Actors.

According to the October 24, 2017 presentation to the UN General Assembly by Dainius Pūras, “In many countries, health is among the most corrupt sectors; this has significant implications for equality and non-discrimination.”

This second Report by the Ad Hoc Committee supports his findings. It details how financial motivations shared among a faction in a medical society, their associates, State Actors and insurers have contributed to a global situation whereby doctors, scientists and parents are attacked because they defend these patients’ rights to health, bodily integrity and life. It is not uncommon for these defenders’ reputations, livelihoods and finances to be ruined — doctors lose their licenses, scientists lose access to research monies and parental rights are violated when ill children under treatment that meet internationally accepted standards are seized from their homes.

Jenna Luché-Thayer, a human rights expert with 33 years of experience in 42 nations reported how the case definition of Lyme borreliosis (LB) was changed by colluding US State Actors and certain members of the Infectious Disease Society of America (IDSA) and that the timing of these changes concurred with the launch of a failed Lyme vaccine, promotion of an unreliable, yet profitable diagnostic test system and the unwillingness of US insurers to cover the chronic or persistent form of the disease as they moved into the ‘managed care’ model.

She noted how the revised LB case definition removed most references to the debilitating symptoms, disabling and potentially fatal complications, persistence and severity of the disease and the unreliable diagnostic technologies. She also noted that contrary to the case definition, over 200 patents — held by IDSA members, State Actors and associates — reflect these serious and life-threatening complications, persistence of the disease and how the infection is often missed by the unreliable serology diagnostic technology.

Luché-Thayer detailed how the current situation of these human rights defenders and this patient group shows violations of articles found in eleven international and/or regional human rights treatises and conventions.

She stated that it appears the corruption started in the early 1990s is reflected in the 2006 IDSA Guidelines that have been promoted globally and also appears to have shaped the World Health Organization’s (WHO) International Classification of Diseases (ICD) codes for the disease.

She stated the Report shows how this corruption appears to be globally organized across institutions such as the Association of Medical Microbiology and Infectious Diseases of Canada, European Union Concerted Action on Lyme Borreliosis (currently defunct) European Society of Clinical Microbiology and Infectious Diseases’ Study Group for Lyme Borreliosis (ESGBOR) and State Actors and is driving unnecessary suffering, death and bankruptcy among this patient group.

The former Senior Advisor to the United Nations and U.S. government asked, “There is universal agreement that prisoners have a right to medical care. Precisely what is the difference between a ‘prisoner of war’ and ‘an eight-year-old boy’ being denied medically necessary antimicrobial care? Seizing the business of a political opposition party leader is prohibited. Precisely what is the difference between ‘seizing the businesses from a political opposition party leader’ and a medical board with members representing one medical society ‘closing down the business of a medical doctor that belongs to a competing medical society’?”

Jim Wilson, President of CanLyme, and Jennifer Kravis, co-founder of LymeHope, lawyer and mother of a daughter with tick borne diseases, testified about the situation in Canada. Only two percent of all Canadian doctors have ever been under investigation by their respective provincial Colleges of Physicians and Surgeons whereas nearly 100 percent of the doctors who diagnose and treat LB clinically have either been harassed by their respective provincial Colleges of Physicians and Surgeons to the point they gave up their medical licenses, or were forced to stop seeing Lyme patients.

Dr. Kenneth Liegner (USA) spoke about how he used to cooperate with the US Centers for Disease Control and Prevention and detected the Lyme infection in the spinal fluid of his patient, Vicki Logan, despite prior antibiotic treatment. Early on, her private health insurer covered extended intravenous antibiotic treatment which improved her condition. Later, when in a nursing home and under Medicaid, her intravenous antibiotic treatment was suspended. While Liegner sought mechanisms for Medicaid reimbursement, Vicki experienced grand mal seizures and was transferred to a local hospital where Liegner did not have privileges. There she was found to have low blood pressure, her condition was not investigated and her family was persuaded to support a ‘do not resuscitate’ order. She subsequently died. An autopsy revealed ongoing neurologic Lyme disease and an acute heart attack that was neither diagnosed nor treated. Her case exemplifies the discrimination persons with Lyme experience.

Special Rapporteur Forst also heard of how many of Liegner’s colleagues were bullied into silence or submission; many of them losing their licenses or going bankrupt because of legal costs to fight the allegations made by insurance companies and supported by certain IDSA members. For example, defender Dr. Joseph Burrascano anticipated his own attacks in his 1993 Senate testimony on the apparent corruption and the unethical obstruction to diagnostics and care experienced by this patient group. Liegner also made a point of saying ‘it was not patients who made these allegations’.

French Professor Christian Perronne is an internationally renowned Infectious and Tropical Diseases specialist with over 300 scientific publications and has played an advisory role to WHO. Perronne told the Special Rapporteur how, following his 2016 presentation on LB at France’s Academy National of Medicine, he was publicly called a “terrorist” by former the President of the Academy, Professor Marc Gentilini.

The Ad Hoc Committee recognizes there are other patient groups and defenders’ experiencing similar human rights violations, and with the increasing corruption found in the health sector globally, these violations are trending across more groups. Emeritus Professor Malcolm Hooper (UK) testified how the defenders of an estimated 15-30 million people with Myalgic Encephalomyelitis diagnosis (also known as ‘chronic fatigue syndrome’) are similarly attacked and discredited. He shared how the guidelines for ME treatment also appear to be riddled with conflicts of interests, fraudulent science and harm patients’ health and obstruct their access to disability payments.

To note, the WHO’s ICD codes for Lyme borreliosis are still inadequate and outdated. When Ad Hoc member Stuckelberger contacted WHO to set a meeting to discuss the LB codes, she received written communications stating that ‘WHO has no person for Lyme borreliosis’– one of the fastest growing vector borne diseases in the world and officially ranked by the European Union as one of the top public health threats in Europe. These inadequate codes may be why in West Africa many persons misdiagnosed with debilitating drug resistant malaria were eventually found to be suffering from borreliosis infection.

According to Ad Hoc Committee founder Luché-Thayer, “Every time a doctor who defends the human rights of their Lyme patients is taken out of business, an estimated 10,000 people lose access to diagnosis and care. This global all-voluntary organization will continue to document the human rights violations and corruption surrounding this borreliosis pandemic; we are committed to addressing these self-serving, financially-motivated threats to global health.”